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1.
Nurs Rep ; 14(1): 532-544, 2024 Feb 27.
Artigo em Inglês | MEDLINE | ID: mdl-38535713

RESUMO

(1) Background: Living with long-term conditions affects both patients and family caregivers. To obtain a more complete overview of this phenomenon, a measurement instrument is needed that includes both perspectives. The aim is to adapt a scale to family caregivers of individuals with long-term conditions. (2) Methods: A methodological proposal is presented that illustrates the adaptation of the EC-PC scale to the family caregiver. Three phases are proposed: adaptation of the items, panel of experts, and pre-test. (3) Results: In the adaptation phase, the items from the original EC-PC were modified to adapt them to the family caregiver, and new items were added associated with the differences in living with LTC from the perspective of family caregivers. In the panel of experts phase, a universal agreement was reached related to the clarity, relevance, and essentiality of the items included. In the pre-test phase, the content of the scale was verified quantitatively and qualitatively. (4) Conclusions: The content of the items of version 5 of the EC-PC-Family showed a high index of inter-judge agreement. When a phenomenon affects both patients and their environment, such as living with LTC, it is necessary to include both perspectives in the measurement tools.

3.
BMJ Open ; 14(1): e077978, 2024 01 10.
Artigo em Inglês | MEDLINE | ID: mdl-38199640

RESUMO

OBJECTIVE: To present the psychometric properties of the living with long-term condition (LwLTCs) scale in an English-speaking population of people with different LTCs. DESIGN: An observational and cross-sectional study, with retest was conducted. Psychometric properties including feasibility, internal consistency, confirmatory factor analysis, reproducibility and content validity were tested. SETTING: The study took place across the UK via primary care surgeries and voluntary organisations, between December 2021 and June 2022. PARTICIPANTS: The study included 577 patients living with different LTCs, as chronic obstructive pulmonary disease, arthritis, chronic heart failure, Parkinson's disease, chronic kidney disease and type 2 diabetes mellitus. Inclusion criteria included: (a) having been diagnosed with one or more of the conditions; (b) being able to read, understand and answer written questionnaires; (c) being fluent in English and (d) being able to provide written informed consent. Patients were involved in the design and pilot study of the scale. RESULTS: A total sample of 577 people with an age range of 37-97 years (98±9.65) were recruited. Internal consistency of the total 26-item LwLTCs scale score was excellent (ordinal alpha=0.90) but confirmatory factor analysis showed better fit indices (Normed Fit Index=0.96; standardised root mean square residual=0.051; Goodness of Fit Index=0.98) for a 20-item LwLTCs scale. CONCLUSIONS: A shorter version of the LwLTCs scale, with just 20 items and with excellent psychometric properties, is recommended. Having a short scale is key when considering the implementation of the scale in clinical practice to develop person-centred pathways and more comprehensive care plans.


Assuntos
Diabetes Mellitus Tipo 2 , Humanos , Adulto , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Projetos Piloto , Psicometria , Reprodutibilidade dos Testes , Reino Unido
4.
BMJ Open Qual ; 12(3)2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37669810

RESUMO

Systematically implementing personalised care has far reaching benefits to individuals, communities and health and social care systems. If done well, personalised care can result in better health outcomes and experiences, more efficient use of health services and reduced health inequalities. Despite these known benefits, implementation of personalised care has been slow. Evaluation is an important step towards achieving the ambition of universally delivered personalised care. There are currently few comprehensive assessments or tools that are designed to understand the implementation of personalised care at a service or system level, or the cultural, practical and behavioural factors influencing this. The aim of this paper is to describe the development and testing of a system-wide evaluation tool. The tool offers a process through which healthcare systems can better understand the current delivery of personalised care and the factors influencing this. With a focus on implementation, the development of the tool was informed by the Consolidated Framework for Implementation Research, and its content is structured using behaviour change theory (COM-B Theory of Behaviour Change Model). The tool consists of four mirrored surveys, which were developed using an iterative exploratory design. This included a series of testing cycles, in which its structure and content were continually refined. To date, it has been used by 24 clinical services, involving 397 service users, 313 front-line practitioners, 73 service managers and 40 commissioners. These services have used the evaluation process to initiate quality improvement, targeted at one of the more aspects of personalised care. The use of the COM-B model increases the likelihood of those improvements being sustained, through identification of the core factors that enable or limit personalised care behaviours among healthcare staff. We have shown this process to be applicable in a wide range of settings, thus it potentially has broad applicability as a tool for cultural change and quality improvement. The next stage of this work will focus on implementation and evaluation, to fully understand if and how the tool can be used to drive improvements in personalised care delivery.


Assuntos
Instalações de Saúde , Avaliação de Processos em Cuidados de Saúde , Humanos , Melhoria de Qualidade
5.
Patient Educ Couns ; 116: 107931, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37604024

RESUMO

OBJECTIVE: To identify multi-sectoral integrated care initiatives for people with Parkinson's disease and caregivers. METHOD: Following the Matrix Method we created a synthesis of literature across methodological approaches. The search was conducted in four databases until June 2022, and included studies focusing on multi-sectoral integrated care initiatives, and how they helped people with Parkinson's disease and caregivers in everyday living. RESULTS: The search yielded 5921 articles of which nine were included. We identified four topics describing characteristics of multi-sectoral integrated care initiatives: 1) Peer-support, 2) Personalised care plan, 3) One-off initiatives limited in time and 4) Presence of a coordinator. And four topics describing how the initiatives helped in everyday living: 1) Confidence, trust and support, 2) Positive changes in health outcomes, 3) Quality of life, coping skills & psychosocial adjustment, and 4) A strengthened multi-agent collaboration and personalised assistance. CONCLUSION: Multi-sectoral integrated care initiatives should be ongoing offers, and include a Parkinson care-coordinator, who can enhance multi-sectoral communication and an individualised approach to information about resources responsive to evolving needs at different disease stages. PRACTICE IMPLICATIONS: Initiatives should be multidisciplinary, multi-sectoral and aimed at people with Parkinson's disease and caregivers, preferably facilitated by a care-coordinator to promote cross-sectoral communication.


Assuntos
Prestação Integrada de Cuidados de Saúde , Doença de Parkinson , Humanos , Cuidadores/psicologia , Qualidade de Vida/psicologia , Doença de Parkinson/terapia , Doença de Parkinson/psicologia , Adaptação Psicológica
6.
Health Qual Life Outcomes ; 21(1): 69, 2023 Jul 10.
Artigo em Inglês | MEDLINE | ID: mdl-37430315

RESUMO

INTRODUCTION: Parkinson's disease is the second most prevalent neurodegenerative disease, affecting 10 million people worldwide. Health and social care professionals need to have personalised tools to evaluate the process of living with Parkinson's disease and consequently, plan individualised and targeted interventions. Recently, the English version of the Living with Long term conditions (LwLTCs) scale has been developed filling an important gap related to person-centred tools to evaluate the process of living with long term conditions among English-speaking population. However, no validation studies for testing its psychometric properties have been conducted. AIM: To analyse the psychometric properties of the LwLTCs scale in a wide English-speaking population living with Parkinson's disease. METHODS: Validation study, with an observational and cross-sectional design. The sample was composed of individuals living with Parkinson's disease from non-NHS services in the community. Psychometric properties including feasibility and acceptability, internal consistency, reproducibility, and construct, internal and known-groups validity were tested. RESULTS: A total sample of 241 people living with Parkinson's disease were included. 6 individuals did not complete 1 or 2 items on the scale. Ordinal alpha was 0.89 for the total scale. The intraclass correlation coefficient for the total scale was 0.88. The LwLTCs scale is strongly correlated with scales measuring satisfaction with life (rs=0.67), quality of life (rs=0.54), and moderately correlated with social support (rs=0.45). Statistically significant difference just for therapy and co-morbidity, yet no for gender, employment situation, or lifestyle changes. CONCLUSIONS: The LwLTCs scale is a valid scale to evaluate how the person is living with Parkinson's disease. Future validation studies to prove the repeatability of the total scale and particularly, domains 3-Self-management, and 4-Integration and internal consistency will be needed. Developing further studies on the English version of the LwLTC in people with other long term conditions is also proposed.


Assuntos
Doenças Neurodegenerativas , Doença de Parkinson , Humanos , Estudos Transversais , Qualidade de Vida , Reprodutibilidade dos Testes
7.
PLoS One ; 18(7): e0285785, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37428782

RESUMO

INTRODUCTION: Regular physical activity is a strategy that is effective in the physical management of long term conditions. The COVID-19 pandemic, led to disruption of physical activity routines for many people with long term conditions. It is important, to understand the experiences of people with long term conditions regarding physical activity during COVID-19 to enable future identification of strategies to mitigate the impact of restrictions on health. OBJECTIVE: To explore perceptions and experiences of people with long term conditions of the impact of the UK Government physical distancing restrictions on their physical activity participation during the COVID-19 pandemic. METHODS: A qualitative study, with in depth videoconference semi-structured interviews were conducted between January and April 2022, with 26 adults living with at least one long term condition in the UK. Data were managed in analytical matrices within Excel and data analysis was conducted using thematic analysis. RESULTS: Two main themes were developed, explaining how participants managed their physical activity during COVID19 lockdowns, and based on those experiences, what they considered should be in place should another lockdown occur:1) COVID-19 and physical activity: Losses, opportunities and adapting to new formats; and 2) Micro, meso, and macro contexts: creating the right conditions for physical activity support in future pandemics. CONCLUSIONS: This study provides information on how people with long term conditions managed their condition during the COVID-19 pandemic and generates new understanding of how physical activity routines changed. These findings will be used to inform stakeholder engagement meetings with individuals with long term conditions and local, regional, and national policy makers, to co-produce recommendations that will help people living with long term conditions remain active during and after COVID-19 and other pandemics.


Assuntos
COVID-19 , Adulto , Humanos , COVID-19/epidemiologia , Saúde Mental , Pandemias , Controle de Doenças Transmissíveis , Exercício Físico
8.
Chronic Illn ; : 17423953231174470, 2023 May 09.
Artigo em Inglês | MEDLINE | ID: mdl-37161264

RESUMO

OBJECTIVES: The purpose of this study was to explore the expectations of and experiences with the public healthcare system of domestic partners of people with Parkinson`s disease (PD) in Denmark and Norway. METHODS: A qualitative exploratory design was applied. The sample consisted of 14 people from Denmark (n = 9) and Norway (n = 5) living with a partner with PD. Semi-structured individual interviews were conducted between June and September 2020, digitally recorded, transcribed verbatim and analysed using a reflexive thematic analysis approach combining inductive and deductive approaches. RESULTS: The main themes were 'negotiating systems of support' and 'balancing being both a partner and a family carer'. Partners take responsibility for the people with whom they live and attempt to fill gaps in the public healthcare system. The most frequently described needs were more information, service coordination as the illness progressed and acknowledgement of the complex role. DISCUSSION: A recommendation for practice is recognition of the complex roles of partners to people with PD and reaching out to both regularly to determine needs. This may enhance the collaboration between partner carers, people with PD and healthcare providers, ensure sustainability of the system and optimise living with PD in the family.

9.
J Clin Nurs ; 32(15-16): 5201-5218, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36732059

RESUMO

AIM: To explore perceptions of people with Parkinson's disease and family carers about the use and impact of health and social care services, community and voluntary sector resources for the management of Parkinson's disease. BACKGROUND: Resources from outside the formal health care system and collaborations between different levels and sectors could address the unmet needs of people with Parkinson's disease and their family carers and improve the management of Parkinson's disease in the community setting. DESIGN: A qualitative exploratory study was carried out in Denmark, Norway, Spain and the United Kingdom and was reported using the COREQ. METHODS: Individual semi-structured interviews were conducted with people with Parkinson's disease and family carers between May and August 2020. Interviews were digitally recorded, transcribed verbatim and analysed using thematic analysis. A meta-ethnographic approach was used to analyse and synthesise cross-national findings. RESULTS: Forty-seven people with Parkinson's disease and 39 family carers participated in the four countries. Four themes and eight sub-themes emerged: (1) Personalised care for needs throughout the Parkinson's disease journey; (2) Accessibility of different types of support systems (including initiatives to support emotional well-being, physical rehabilitation, information on the healthcare services, voluntary associations and community groups); (3) Multiagency collaborations, a more comprehensive approach; (4) Acknowledgment of people with Parkinson's and family carers own role in Parkinson's disease management. CONCLUSIONS: An integrated and person-and-community-centred approach, which includes the participation of the health, social, voluntary and community sectors, is desired by people with Parkinson's disease and their family carers to improve the management of Parkinson's in the community setting. These findings could contribute to the creation of more sustainable care systems at the European level that would better respond to individual and changing needs in people with Parkinson's disease and their family carers, and in other long-term conditions. PATIENT OR PUBLIC CONTRIBUTION: The Patient and Public Involvement groups contributed to the design of the study, the interview guides and validation of findings. RELEVANCE TO CLINICAL PRACTICE: This study will inform the management of Parkinson's disease at the community level and the use of resources not only directly linked to the health system. Taking into account all the actors that provide care and support to people with Parkinson' disease and family carers facilitates the creation of strategies that better respond to individual needs. Nurses and other health and social care professionals in the community and specialist levels of care should collaborate to develop multisectoral strategies that promote personalised and integrated care throughout the Parkinson's journey.


Assuntos
Cuidadores , Doença de Parkinson , Humanos , Cuidadores/psicologia , Doença de Parkinson/terapia , Doença de Parkinson/psicologia , Pesquisa Qualitativa , Serviço Social , Gerenciamento Clínico
10.
J Clin Nurs ; 32(7-8): 1421-1432, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-35581711

RESUMO

OBJECTIVES: The aim of this study was to understand how people living with Parkinson's and healthcare professionals perceived their care management and interactions with health services were affected during the COVID-19 pandemic. BACKGROUND: During the COVID-19 pandemic, many governments introduced restrictions and services that support Parkinson's care management had to cease or be delivered remotely. These changes may have had an impact on the well-being of people living with Parkinson's. METHODS: A qualitative exploratory UK study was carried out. Semi-structured individual interviews with people living with Parkinson's and health professionals were recorded, transcribed verbatim and analysed using Braun´s and Clarke´s thematic analysis. Eleven patients and 10 health professionals were recruited between April and September 2020. The study was reported using the COREQ. RESULTS: Two main themes were identified. In the first theme, many patients and professionals reported that the COVID-19 pandemic made some people living with Parkinson's feel isolated and vulnerable due to disruptions to their social networks and usual activities related to Parkinson's disease care. However, other patients remained connected with their networks. In the second theme, patients and most professionals mentioned that some clinical practices were cancelled, delayed or transformed to remote consultation. CONCLUSION: The COVID-19 restrictions had an impact on how people living with Parkinson's managed their care and in their interactions with healthcare services. Health professionals should assess the risk of vulnerability, social isolation, physical inactivity and confidence with remote consultations in people living with Parkinson's. This might inform a rethinking of existing clinical interactions with people living with Parkinson's towards a flexible, sustainable, person-centred care model. RELEVANCE TO CLINICAL PRACTICE: This study has shown that Parkinson's care management and interactions with healthcare services should provide personalised and flexible support. To meet this challenge, the design of the organisation of health services should include greater involvement of patients and person-centred care models.


Assuntos
COVID-19 , Doença de Parkinson , Humanos , COVID-19/epidemiologia , Doença de Parkinson/epidemiologia , Pandemias , Pessoal de Saúde , Isolamento Social
11.
Health Expect ; 26(2): 670-682, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36573594

RESUMO

BACKGROUND: Health and social care systems face difficulties in managing multimorbidity, disease burden and complex needs in long-term conditions such as Parkinson's disease. OBJECTIVE: This study aimed to develop a European understanding of how health and social care professionals can collaborate with stakeholders from different organizations and sectors to enhance the management of Parkinson's disease in a community setting by identifying the existing gaps in this process and how people with Parkinson's disease and their family carers could benefit from these partnerships. METHODS: A mixed-methods sequential study was conducted in Denmark, Norway, Spain and the United Kingdom. The findings from the qualitative phase are presented. Individual semistructured interviews were analysed using Braun's and Clarke's thematic analysis. A meta-ethnography approach was used to analyse and synthesize cross-national findings. RESULTS: A total of 41 healthcare professionals and 39 stakeholders from different disciplines and sectors were interviewed in the four countries. The participants acknowledged a lack of awareness of available resources and poor communication between the different support systems in the management of Parkinson's disease. To promote multiagency collaborations, the participants highlighted the need to organize services along the Parkinson's disease journey, patient involvement and strategic involvement of carers in organizing resources and Parkinson's disease care pathways. According to the participants, the benefits from multiagency partnerships could lead to an enhanced continuity of care and specialized knowledge, mobilization of resources in the community, personalized support and improved access to services. CONCLUSIONS: Policymakers are called upon to create formal structures that facilitate multisectoral collaborations to promote an integrated system of care for the management of Parkinson's disease in the community. To address this challenge, we propose five strategies showing how organizations can work together to optimize the use of resources and enhance the management of Parkinson's disease throughout the illness trajectory. PATIENT OR PUBLIC CONTRIBUTION: Patient and Public Involvement groups made up of stakeholders, healthcare professionals, patients with Parkinson's disease and family carers participated in the design of the study, the development of the interview guides and the validation of the findings.


Assuntos
Doença de Parkinson , Humanos , Doença de Parkinson/terapia , Pesquisa Qualitativa , Cuidadores , Pessoal de Saúde , Gerenciamento Clínico
12.
Health Soc Care Community ; 30(6): e3507-e3518, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-35975602

RESUMO

People with Parkinson's disease (PD) may find it difficult to identify and access the wide number of services they need and are entitled to along their complex PD journey. As part of the project OPTIM-PARK - Optimisation of community resources and systems of support to enhance the process of living with Parkinson's Disease, document analysis was developed to create overviews of existing resources and systems of support in Denmark, Norway, Spain and the United Kingdom. Documents on community resources, policies, guidelines and professional recommendations were the main sources of information. They were sought systematically at official websites of the public sector (national and regional levels) and websites of non-governmental organisations and scientific societies; searches were performed in October 2020 and updated in September 2021. A higher-level cross-national content analysis integrated all the country-specific information. Data- and concept-driven coding frames were developed; trial coding and peer review strengthened face validity and reliability. The analysis led to overviews of: (1) Key aims at patient and societal levels. (2) Key elements in form of professional approaches. (3) Community resources. (4) Legally anchored services. In general, clear descriptions of how to implement care pathways and tools to facilitate delivery were missing in the included documents, and pathways and guidelines did not include referral to general social support, social security support or labour and employment support. The results shed light on the complex support systems and resources and can inspire the planning of more comprehensive care pathways for people with PD and other long-term conditions.


Assuntos
Procedimentos Clínicos , Doença de Parkinson , Humanos , Doença de Parkinson/terapia , Espanha , Reprodutibilidade dos Testes , Análise Documental , Noruega , Serviço Social , Reino Unido , Dinamarca
13.
Health Expect ; 25(4): 1892-1903, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35748121

RESUMO

BACKGROUND: Obesity in adults is a leading health challenge that causes millions of deaths worldwide and represents a risk factor for developing long-term conditions. Social relationships are one of the multiple drivers shaping obesity and obesity-related practices. However, there is still little evidence as to the processes by which relationships influence the adoption of positive and negative obesity health-related practices-eating, physical activity and alcohol intake. This study aims first to identify the types of relationships relevant to the adoption of practices in adults with obesity and, second, to explore the type of activities these relationships engage with or promote to produce those practices and their potential health consequences. METHODS: Nineteen adults who have or had a history of obesity living in the United Kingdom were interviewed between May 2020 and March 2021. Experiences were explored through semi-structured interviews and network mapping via videoconferencing. Data were analysed using a hermeneutic phenomenology informed thematic analysis. RESULTS: Three main themes were identified: (1) everyday familial routines matter, (2) chasing healthier lifestyles: comparing, modelling and connecting emotionally with friends and (3) healthcare professionals as negative influencers. DISCUSSION AND CONCLUSIONS: Findings show how different types of relationships might shape the risk of developing and losing weight. They uncover the power of informal networks (family and friends) and highlight the potentially negative impact of formal ones (healthcare professionals). Our exploration could add to arguments about the need for stakeholders confronting obesity to be aware of the relevance of everyday social relationships in health and well-being strategies for tackling the issue, in creating collective and individual person-centred long-term sustainable actions. PATIENT AND PUBLIC CONTRIBUTION: Feedback on the tone/content of the interview questions was provided by the two first participants. The results were checked and received feedback from one of the interviewees.


Assuntos
Relações Interpessoais , Obesidade , Adulto , Exercício Físico/psicologia , Amigos/psicologia , Comportamentos Relacionados com a Saúde , Pessoal de Saúde/psicologia , Humanos , Obesidade/psicologia , Pesquisa Qualitativa , Reino Unido
14.
Artigo em Inglês | MEDLINE | ID: mdl-34639681

RESUMO

It is essential that healthcare and social professionals understand the daily lives of people with chronic diseases, and the variables that influence them. The aim of this study was to identify the determinants influencing the process of living with long-term conditions. To investigate this, an observational, international, cross-sectional study was carried out. A consecutive sample of 1788 Spanish-speaking population living with chronic obstructive pulmonary disease, chronic heart failure and type 2 diabetes mellitus were included. Descriptive statistics and multiple linear regression models were performed. The linear regression models identified that social support (ß = 0.39, p < 0.001) and the satisfaction with life (ß = 0.37, p < 0.001) were the main determinants in the process of living with a long-term condition (49% of the variance). Age (ß = -0.08, p = 0.01) and disease duration (ß = 0.07, p = 0.01) were determinants only in the chronic heart failure subgroup, and country was significant in the chronic obstructive pulmonary disease subgroup (ß = -0.15, p = 0.002). Satisfaction with life and social support were key determinants influencing the process of living with long-term conditions. As such, those aspects should be included in the design of interventions focused on the achievement of a positive living in people with long-term conditions.


Assuntos
Diabetes Mellitus Tipo 2 , Insuficiência Cardíaca , Doença Pulmonar Obstrutiva Crônica , Doença Crônica , Estudos Transversais , Diabetes Mellitus Tipo 2/epidemiologia , Insuficiência Cardíaca/epidemiologia , Humanos , Doença Pulmonar Obstrutiva Crônica/epidemiologia
15.
Health Expect ; 24(6): 2065-2077, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34492734

RESUMO

BACKGROUND: The Living with Chronic Illness (LW-CI) Scale is a comprehensive patient-reported outcome measure that evaluates the complex process of living with long-term conditions. OBJECTIVE: This study aimed to analyse the psychometric properties of the LW-CI scale according to the classic test theory and the Rasch model among individuals living with different long-term conditions. DESIGN: This was an observational, international and cross-sectional study. METHODS: A total of 2753 people from six Spanish-speaking countries living with type 2 diabetes mellitus, chronic obstructive pulmonary disease, chronic heart failure, Parkinson's disease, hypertension and osteoarthritis were included. The acceptability, internal consistency and validity of the LW-CI scale were analysed using the classical test theory, and fit to the model, unidimensionality, person separation index, item local independency and differential item functioning were analysed using the Rasch model. RESULTS: Cronbach's α for the LW-CI scale was .91, and correlation values for all domains of the LW-CI scale ranged from .62 to .68, except for Domain 1, which showed correlation coefficients less than .30. The LW-CI domains showed a good fit to the Rasch model, with unidimensionality, item local independency and moderate reliability providing scores in a true interval scale. Except for two items, the LW-CI scale was free from bias by long-term condition type. DISCUSSION: After some adjustments, the LW-CI scale is a reliable and valid measure showing a good fit to the Rasch model and is ready for use in research and clinical practice. Future implementation studies are suggested. PATIENT AND PUBLIC CONTRIBUTION: Patient and public involvement was conducted before this validation study - in the pilot study phase.


Assuntos
Diabetes Mellitus Tipo 2 , Doença Crônica , Estudos Transversais , Humanos , Projetos Piloto , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários
16.
Artigo em Inglês | MEDLINE | ID: mdl-34299745

RESUMO

(1) Background: When living with one or more long term conditions (LTCs), both the patient and the family experience the impact of the condition at different levels. The family's needs and perceptions should be considered in the process of caring for people with LTCs. The aim of this review is to understand "the process of living with LTCs" from a family perspective. (2) Methods: A scoping review and narrative synthesis were conducted using a systematic methodology in MEDLINE, CINAHL, Web of Science and PsycINFO, in English and Spanish, including evidence from 2018. (3) Results: A total of 28 articles were included in the review. Acceptance, coping, self-management, integration, and adjustment were key attributes in the process of living with LTCs from the perspective of family caregivers that interrelated in a dynamic way through different mechanisms: being aware of the changing situation, personal networks, information and education, personal conditions, attitude to life and communication. (4) Conclusions: The five attributes that comprise living with LTCs from the perspective of the family caregiver are closely connected of to those of patients living with LTCs; however, self-management and integration have a different meaning and application.


Assuntos
Adaptação Psicológica , Cuidadores , Comunicação , Humanos , Narração
17.
J Foot Ankle Res ; 14(1): 46, 2021 Jun 30.
Artigo em Inglês | MEDLINE | ID: mdl-34193240

RESUMO

BACKGROUND: In response to the COVID-19 pandemic, populations were advised to remain at home to control viral spread. Government-mandated restrictions on free movement affected individuals' engagement with physical activity, with reported increases leading to biopsychosocial health benefits and conversely increased sedentary behaviour leading to poorer health. Good foot health is key to enabling physical activity and maximal participation in activities of occupation and daily living. METHODS: A population-based cross-sectional study was performed, using a web-based platform. Quantitative and qualitative data were captured through responses to closed and open survey questions. Anybody with a foot health condition was eligible to participate in the online survey. Links were sent through professional networks, support groups and charities, using a snowball strategy to maximise participation. RESULTS: Two hundred fifty-five respondents completed the survey. Most (n = 193, 75.69%) reported an ongoing foot pain or problem that had been present for 4 weeks or longer, whilst 49 respondents (19.22%) noted a new pain or problem. Pain was the most frequently reported symptom (n = 139, 54.51%), whilst change in appearance of the foot was also commonly reported (n = 122, 47.84%), often alongside the observable presence of swelling. Musculoskeletal foot symptoms were frequently reported (n = 123, 48%), and were significantly associated with reported reduced physical activity (X2 = 6.61, p = 0.010). Following qualitative analysis five themes and 11 subthemes emerged, informed by 49 independent codes. A central theme of lockdown disrupting support networks, both formal (healthcare providers) and informal (friends or family members) emerged. The 5 sub-themes were: 1. foot pain is a constant companion, 2. self-care, 3. 'cope or crumble' scenarios, 4. future intent to access healthcare and 5. reduced ability to undertake physical activity. CONCLUSIONS: Pain was the most frequently reported foot problem during COVID-19 lockdown restriction. Lockdown restrictions disrupted support networks integral to maintaining foot health. Poor foot health impacted people's ability to remain physically active. Complaints previously considered relatively 'minor' such as support for skin and nail care, were found to be exacerbated by restricted support networks, leading to greater negative impact.


Assuntos
COVID-19/prevenção & controle , Exercício Físico/psicologia , Pé/patologia , Dor Musculoesquelética/epidemiologia , Isolamento Social/psicologia , Atividades Cotidianas/psicologia , Adulto , Idoso , COVID-19/diagnóstico , COVID-19/epidemiologia , COVID-19/virologia , Controle de Doenças Transmissíveis/estatística & dados numéricos , Estudos Transversais , Estudos de Avaliação como Assunto , Feminino , Regulamentação Governamental , Humanos , Masculino , Pessoa de Meia-Idade , Dor Musculoesquelética/diagnóstico , Participação do Paciente , SARS-CoV-2/genética , Comportamento Sedentário , Autocuidado/psicologia , Grupos de Autoajuda/organização & administração , Inquéritos e Questionários
18.
Nurs Open ; 8(4): 1909-1919, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33723922

RESUMO

AIM: To cross-culturally adapt and determine the preliminary psychometric properties of the English version of the LwLTC Scale in people living with long-term conditions in the UK. DESIGN: Cross-cultural adaptation and cross-sectional study. METHODS: Forty-nine patients with five long-term conditions were included in the pilot study. Patients completed the English version of the LwLTC Scale and a bespoke questionnaire related to the scale. Feasibility/acceptability, internal consistency and construct validity were analysed. RESULTS: 59.2% of participants were female, with an average age of 65.9 (SD = 12.30). Cronbach's alpha coefficient ranged between 0.50 and 0.84. Content validity showed that the English version of the LwLTC Scale was useful even negative items were identified. CONCLUSION: These preliminary psychometric properties are satisfactory and promising. Further psychometric analyses are needed to verify them in a larger and more representative sample size during the main validation study, which is now in process.


Assuntos
Projetos Piloto , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Psicometria , Reprodutibilidade dos Testes , Reino Unido
20.
Nurs Open ; 8(2): 675-687, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33570296

RESUMO

AIM: To understand and describe the experiences and perceptions of migrant Spanish nurses working in the UK. DESIGN: Online survey with open-ended questions. METHODS: A total of 371 participants were recruited from online groups related to Spanish nurses working in the UK. RESULTS: Four themes emerged from their content analysis: "Motivations for emigration: running away from job insecurity and unemployment," "Professional recognition," "Seeking better life stability" and "Future neediness: between a rock and a hard place." In these results, professional recognition was highlighted as a reason to stay in the host country, although the uncertainty represented by Brexit is reversing the migration trend that began years ago. Policymakers should be aware of these experiences to promote strategies and programmes, which encourage inclusion in the host country and will help these nurses in their transition process.


Assuntos
Emigração e Imigração , Motivação , Enfermeiras e Enfermeiros , União Europeia , Feminino , Humanos , Masculino , Inquéritos e Questionários , Reino Unido
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